Mrs. Labit, I have to tell you that you may never use your arm again.

Since it’s almost all back to normal now… I thought it might be time to share some thoughts from the perspective of a #ceomom who, not long ago, wasn’t sure she was ever going to be able to type again.

One of my hips has had something wrong with it for at least ten years.  I’ve ended several pregnancies in a wheelchair, unable to walk more than short distances.  With each pregnancy, by 16 weeks, I was limited in the distance I could walk.  By 30 weeks, I was using lidocaine patches to numb the torture in my hip just to go to sleep at night.  And by 40 weeks, I had to sleep all day on Saturday to be able to get from the car to where we like to sit at church without crying.  My obstetrician sent me to a chiropractor.  He suggested massage.  When my baby was born, he didn’t send me to physical therapy… he told me that it would get better gradually.  After pregnancy two and three, I was back on my feet within a few weeks.  After baby four though, life changed.  My hip didn’t rebound.  After trying several different solutions, I finally made an appointment with an orthopedic clinic and started into a two year journey of trying to figure out what might be wrong.

Appointment 1: Prescription for physical therapy and a mention of possible injections and hip surgery.

Appointment 2: First injection of cortisone into my hip joint.

Appointment 3: Injection relieved pain for a few hours followed by cortisone flare.  Discussion of need for MRA.  More physical therapy.

Appointment 4: X-ray guided MRA involving another injection of anesthetic and dye into my hip joint followed by a week of intense pain.

Appointment 5: FAI officially diagnosed.  Discussion about scheduling surgery.  Doctor wasn’t sure he could resolve all of the pain that I was experiencing.  I decided to wait and see if things got better.

Appointment 6: Pain continues to worsen.  Further discussion about surgery.  Doctor suggested getting it on the calendar.  Again, emphasized his concern about resolving the pain.

Phone Call: Seeking a second opinion, I called the Mayo Clinic.   Sent records.

Phone Call:  Mayo Clinic agreed to see me as a patient.

Appointment 7: More in-depth x-rays.  Visited with surgeon who diagnosed me with FAI and a nasty case of trochanteric bursitis.

Appointment 8: X-ray guided injection of cortisone and anesthetic into the trochanteric bursa.

Phone Call: Surgery scheduled.

Appointment 9: Pre-surgery visit where discussion was had regarding reshaping the top of my femur and my hip socket.  Decision to perform a bursectomy in hopes of removing the inflamed tissue that was refusing to resolve.

(Out-Patient) Surgery:  3 ½ hours with an amazing surgical team who gave me a new lease on life.

Post-Surgery: Drifting in and out of consciousness with heavy pain meds in my system.  Several hours into recovery, I tried to take a drink of something and realized that I couldn’t move my right arm. Surgical team appears nearly immediately with very serious looks on their faces.  Surgeon decides that I should stay in the hospital since I’m unable to move to get myself out of bed.  My right arm couldn’t be used to prop myself up and it was going to take some learning just to be able to do things like use the toilet again.

Post Surgery: One of the residents appears at the end of my bed.  At this point in time, I could move my pinky finger and my ring finger slightly.  The rest of my arm had no feeling and was, for lack of a better word, dead all the way up to my shoulder.

“Mrs. Labit, I have to tell you that you may never regain the use of your arm.”

Those words jolted through my body.  I was still very drugged, very aware of my arm’s refusal to follow instructions, but I remember looking at his face in tears and saying, “I refuse to accept that. I believe in the power of prayer.  Jesus heals.  I will get better. I will use my arm again.”

Most of my audience expects me to be neutral about certain things, so I don’t talk about my faith very often.  But in this incredibly dark moment, it was faith that came out of my mouth first and it was through faith that God gave me the strength to get through the next few weeks of life without falling utterly to pieces.

The next morning, I started to realize the severity of the circumstances.  During surgery, malpositioning of my arm had caused it to “fall asleep” and the outer part of the nerves, the myelin, had basically died due to lack of blood flow.  For those who like to research medical things, the diagnosis was partial bracial plexus palsy.  Nobody could predict if or when the myelin would grow back.  We got various answers about how often this occurs.  Physical therapists apparently see it all the time.  Surgeons claim to rarely see it.  The few studies we could find online showed that improvement happens within hours or days… or months or years.  If the myelin did grow back, it would regrow at about 1mm per day.   With numbness up to my shoulder, at 1mm per day, it could be as long as six months before I could lift my arm again and a year before I would be able to feel my fingers.

In the moment, it felt more overwhelming that it really was… but I kept asking myself how in the world I was going to be able to learn how to walk again without the use of my right arm.  I wouldn’t let myself think about how I was going to be able to run the business.  Being able to write and type is essential to life behind my laptop.   And what was I going to tell you, the 95,000+ people who follow my social media in it’s various forms…?

I spent three days in the hospital learning how to get out of bed, how to use the bathroom, and how to dress myself.  Jimmy had to learn how to lift me with a belt, safely transfer me to a wheelchair, get me onto the toilet, and then back to bed.  We had an amazing physical therapist who took me down to her office the day that I went home and handed me a pen.  That day, my fingers were able to grasp the pen and I sloppily wrote my name using my shoulder muscles to move my hand around.  We went home in a wheelchair with an intense physical therapy regimen for both my hip and my arm.  I couldn’t hold my baby.  I couldn’t lift my legs.  I couldn’t be alone because, if I fell, I had no way to get off the floor.

Surgery was on December 1st.  At two weeks post-op, I went to church for the first time in a wheelchair.  Someone walked up to me before service, introduced themselves, reaching their hand out to shake my hand.  I used my left arm to lift my right arm to shake their hand.  Friends were bringing meals over.  Jimmy eventually had to go back to work, so people were coming  to keep me safe during the day.  I was trying to learn how to to lift a fork again… and then it was Christmas.

I’d been doing really well emotionally up to this point in my recovery, but, while I was still in the hospital, they’d put me on a drug called Neurontin.  Neurontin didn’t do anything to help the nerves recover, but it did help to ease the pain associated with the nerves starting to wake up. Imagine an army of ants crawling around under your skin.  That medicine kept the army of ants asleep.  I was starting to not need the pain meds as often, which was great, but as soon as the fog of Percocet began to wear off, I noticed that the Neurontin was affecting my ability to think.  At one point, I’d tried to draft a status about something, but could barely get the words together to write a complete sentence.   By Christmas, I was a wreck…  we host most holidays in our home and, while I always fall short of my own expectations, I’m used to at least attempting that “perfect” holiday every year. The day before Christmas Eve, I was in the emergency room getting checked out for a suspected blood clot in my lung. Christmas Eve, we had one side of our family over.   We’d cooked most of Christmas dinner before surgery, so all that was left was preparing the meat, appetizers and a salad.  Jimmy smoked salmon on the grill and family brought the extras.  The house though…  it wasn’t perfect and in my not-quite-logical state, I needed it to be perfect.  My arm still wasn’t working, my hip hurt after being up in the wheelchair for too many hours, and the kids were tired of being told to pick things up over and over again.  I finally went to my room and laid there and cried until it was time to go to candle-light services at our church.  As they sang Silent Night, I stared at the candle in my left hand, praying that my right hand would soon be able to hold it again.

Christmas Day unfolded much like Christmas Eve.  We had to stretch the food to accommodate a second family gathering.  Jimmy made fish again and we served the exact same meal to the other side of the family.  We opened gifts with the kids and then everyone went their separate ways to talk or play with new presents.  I went to sleep.  Later that evening, I was sitting in the living room and decided to try to lift my arm again.  Right there, without any indication at all that it was going to work, my muscles fired in my bicep and I lifted my arm up off of my lap for the first time since surgery.  While other motion was slowly starting to come back, that day felt like the real beginning of my recovery.  Within two weeks, I left the wheelchair permanently in the corner.  Within four weeks, I was down to one crutch and starting to venture out short distances unassisted. Within eight weeks, I did my first set of presentations at MommyCon with the help of my husband who carried all of the everything.

It’s now April.  Spring is coming… the doctor was wrong…  and five months of physical therapy later, I’m finally starting to actually feel like I might be getting better than I was before surgery.  My arm is entirely recovered.  I can feel things equally on both sides.  I’ve been all the way back at work since early February.  I’m traveling and pulling a suitcase in the airport.  Walking long distances and standing for long periods of time is still difficult, but I can exercise.  My hip is testy, but everything I read from patients who have had this procedure says that it takes at least a year for the full benefit of the procedure to be realized.

You had no idea this was happening.  We decided not to talk about it because we were concerned that people would decide that the worst case scenario was going to become reality.  The power of their words and their doubt felt so overwhelming that it seemed better to just be quiet.

Quiet is good because it gives space for truth.  I believe in the power of prayer.  I believe in the power of persistence.  I believe in the power of never, ever, ever giving up.  I believe that words have the power to bring life and peace.

I learned to let people be responsible for doing their jobs.  I learned to be ok with my husband helping me out of bed and lifting my legs back into bed.  I wore a bib.  I moved a mirror so I couldn’t see myself.  Through the fog of the drugs, I wrote and processed my way through handling a women’s rights issue with the help of a civil rights attorney.  That story hasn’t been published yet… but one day, it will be.  I gained a few pounds that I’m now in the middle of loosing so I can fit back into my closet full of clothes.  I got an email about a piece of legislation that contains some upsetting language that denies equal access to cloth and disposable diapers for families in need. It would have been easy to give up and call it too big.  Instead, I’m being surrounded with an incredible team of highly educated professionals who understand the problem, have experience solving similar problems, and can visualize effective solutions. Lawyers, strategists, legislators, lobbyists, physicians, birth and postpartum professionals, and researchers.  One by one, they are coming out of the shadows.  Change is on the horizon.

When things get rough, this is what we do.   We get quiet.  We decide to fight.  And then we fight.   We choose to pray. And then we pray. We believe for the best. And then we expect the best.  We do today.  Because today is all we have.  And then tomorrow looks a little different.

These, my friends, are the rules.

Jenn is the Founder and CEO of Cotton Babies. She holds an Executive MBA from Washington University. She was awarded Ernst & Young’s Entrepreneur of the Year award in the Emerging Category for the Central Midwest Region in 2011. Among many other awards, she recently received a 2017 YWCA Leader of Distinction Award for Entrepreneurship. Jenn holds many patents on various inventions in a number of different countries and is listed as one of 50 Missourians You Should Know. She is particularly fascinated by languages, chickens, and children (she has four) when she’s not reading economics journals. Jenn offers mentorship to product developers at any stage in the journey from idea to shelf.